Leah and Travis Wright of Pasco had never heard of Zika virus when their daughter, Isla, was born with microcephaly. But they say the global outbreak has inspired them to share their experience.
When Leah and Travis Wright saw news reports about the spread of the Zika virus in Brazil and the suspected tie to a little-known birth defect, no one had to tell them about the devastation caused by microcephaly.
The Pasco couple’s daughter, Isla Rose, who turns 2 on Friday, was born with the condition that leaves babies with smaller-than-normal heads, brain damage, and possibly hearing loss and other deficits.
“We were just so scared at first,” said Travis Wright, 35, a fourth-grade teacher.
But it wasn’t a mosquito in a tropical hot spot that triggered their daughter’s problems. Unlike Brazil’s more than 4,700 reported Zika-related cases, Isla’s microcephaly was caused by a virus that’s largely unknown but far more widespread: cytomegalovirus or CMV.
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Leah Wright, 33, also a teacher, contracted CMV during pregnancy and said she wants other moms to know that their babies could be at risk for microcephaly, even without travel to a foreign country.
“I see all this information on the Zika virus, but why is there not more information on CMV?” she said. “I just thought I could offer hope to women who are pregnant in this scary situation.”
About one in every 150 children in the U.S. is born with congenital CMV infection, according to the Centers for Disease Control and Prevention (CDC). That’s about 30,000 infants a year, although more than 80 percent of affected children never have symptoms.
Most adults have been infected with CMV at some point, often without symptoms, but half of pregnant women in the U.S. have never been infected, according to the CDC.
The virus is spread through bodily fluids; for example, from contact with CMV in urine or in the saliva of babies and children, which can be a particular risk for pregnant women.
At the same time, about 25,000 babies a year in the U.S., including about 550 in Washington state, are born with microcephaly, which is a clinical observation of a smaller-than-normal head.
The condition also can be caused by other infections, such as rubella and the parasite-spread toxoplasmosis, severe malnutrition and genetic or environmental exposures.
Isla (pronounced Eye-La) was severely affected. Her head is far smaller than a normal 2-year-old’s, posting in the negative 10th percentile on a normal growth chart. She has hydrocephalus, meaning there’s too much fluid in her brain, and profound hearing loss. She can’t hold up her own head, has poor muscle tone and must use a feeding tube.
“She wasn’t supposed to survive,” said Leah Wright. One doctor advised the couple to terminate the pregnancy, saying “this baby needs to be with Jesus,” she recalled.
But the Wrights, who had endured multiple miscarriages, said they relied on faith to continue the pregnancy and asked for a different doctor.
After Isla was born, she was referred to Seattle Children’s, which has one of the nation’s few expert sites for microcephaly treatment and research, the Center for Integrative Brain Research.
Dr. Hannah Tully, a pediatric neurologist who saw Isla as a baby, said the effects of microcephaly can range from mild to severe. In countries such as the U.S., where many parents have access to medical care and therapy, the kids can live happy lives.
In Brazil, especially the poorer communities where many microcephaly cases have been detected, the prospects may be grim.
“A lot depends on the socioeconomic status of those kids,” she said.
Although Zika and CMV are different types of viruses, Tully said she hopes CMV can offer clues about how Zika possibly causes microcephaly. It’s still very early, and scientists have much to learn about exactly when and by what mechanism Zika virus may cause what appear to be unusually severe cases of the disorder.
The Wrights, however, said they’d like their experience to offer hope to pregnant women scared by the prospect of having babies with microcephaly.
Caring for Isla isn’t easy, but it’s profoundly rewarding, said Leah Wright, who left her teaching job to tend to her daughter.
“It’s difficult, but it’s worth it,” she said. “She has definitely made me a better person.”